Category Archives: DSMA Blog Carnival

Today I decided it would be a great time to answer the DSMA Blog Carnival post before I start re-posting old blogs during my vacation. I had long since forgotten what June’s topic was so imagine my surprise when I read “Do you get nervous or stressed when you have to go to your endo/doc appointment? Why or why not? Be honest.”

Today is our clinic appointment! Am I nervous? No. Am I stressed? A little. I hate the waiting at the clinic. We had a great appointment last time we were there. We chatted with the doctor. A nurse took my son’s blood for his A1c and we were out of there. We were two happy people!

The other problem with this appointment is of course my son is having a high at night that I just can’t quite tweak. They may, or may not tell me to do the things that I am considering–adjust a carb to insulin ratio to cover the food he is eating. Look at upping a basal rate before he wakes to cut down on what looks like some growth hormones kicking his butt. That is all well and fine but remember I said that I am going on vacation and so is he?

My son’s activity level could go up as he rides his quad daily and catches up with old friends. This will mean that the change is basal rates is unnecessary. Add to that the fact that he isn’t “that” high, he has only woken up to two lows–in his life!, and he has had a few nights when the readings were okay. I am thinking about adjusting the carb to insulin ratio, leaving the rest and texting from Ireland to see what’s what.

Why don’t I get nervous? I don’t get nervous because I don’t look at them as the judge and jury. I am. I am my worst critic. I am much tougher on us than they are. I know what I have to do. I know the A1c that I want to see. I have said time and time again, I was trained by the best. Between an amazing doctor for the first 10 years of diabetes and the CWD Parents list, I have learned a lot and kept myself on top of the latest information. I am not intimidated because I often know as much as the staff. We are all the experts and when there is mutual respect there can be no need to be nervous.

So what can they do for us? I am hoping that they will begin to work a lot more with my son. We have had the alcohol discussion. I know that they have spoken about it at FFL teen sessions. He needs to establish a relationship with his d-team and understand why its important for him to continue to be diligent with his care after he leaves their office. Our old doctor spoke directly to him, making him take charge. I am trying to step aside more often so that they can do this in our new setting as well. My son is quiet and private but this is not the place for that privacy.

So are clinic appointments a source of stress for us? No. They are a necessary evil but to date we are blessed by teams that respect us and work with us not against us.

After complaining yesterday about having to begin to search for a new insulin pump and the lack of new technology, I figured that I really had to add my two cents to the DSMA July question of “What improvements of adjustments would you make to current diabetes technology?” Years ago, I had the privledge of attending a diabetes conference in Edmonton. At that time I was shown some amazing new technologies. I looked at a pump that was simply a chip. It was about the size of a small Post-it note. Inside the Nano pump was the insulin a person required and the mechanics of a normal pump. The device would have a remote from which you would bolus and program. It looked amazing and I waited for it to appear on the market…and I waited. I have seen similar prototypes. I have seen the Omni pod but none of them were close in size or design to this new pump.

Looking for a new pump today, I see nothing that excites me the way new Cozmo technology has done it for me over the years. When I first started pump shopping over eight years ago, Cozmo led the way in bells and whistles. It had alerts that were second to none, but I quickly learned that a person wearing a pump with alarms simply turns off the alarm without paying any attention to what it was for! Well maybe not everyone but my son definitely did. I suggested that pump companies allow the pump to zap rather than beep or vibrate. I felt that the shock may stimulate my son to properly respond rather than ignore. I am still waiting for this feature.

Manufacturers seem to now feel that the pumps they have will do, despite not reaching Cozmo standards I have been told. Their focus now is integrating CGM technology. Here is my first big complaint. Our first pump was funded by family and supplies were paid out of our pocket. After a lot of lobbying, pumps and their supplies are now covered for my son in this province. CGM technology is financially out of my reach. Manufacturers, if you want to make some changes then please make technology available for everyone no matter what the size of their wallet or their insurance plan.

New glucometers, however remain in the budget of the masses for the most part now. They are often offered free with 100 test strips. Honestly, for the companies who are not doing this…I spend over $400 per month on test strips. I think that more than covers the cost of your meters over the course of a year. Please continue, or start, to offer all meters at a reduced (or free) cost to those of us using your product more than we use toothpaste.

Meters have come a long way in the past 11 years, but also seem to have stalled in technology. They also seem more focused on integrating with pumps…which is not a bad thing BUT when we used the Cozmonitor, I could not keep up with the batteries. They forgot that we test 10+ times per day and batteries have to withstand that. The idea of an integrated system is wonderful for logging and keeping track but its cost and lack of flexibility led us back on the trail of the perfect meter. Don’t get me wrong, we have gone from a finger covered in blood to a pin drop of blood. We have gone from 30 aggonizing seconds to 5 dreaded seconds. These are all things that are hugely appreciated.

We still have multiple step Glucagon kits but perhaps because we never hope to use it, we just don’t care as much as we do about our meters and pumps. Insulins have evolved from the unpredictable NPH and the slow regular insulins to rapid insulins and more stable long lasting insulin. This is a huge benefit for everyone.

Technology has come along way since we started on this road, but seems to have veered off on its own track lately. The move seems to be away from the general masses who have to pay their own bill. My main message…please work to perfect what we can afford and help to bring into our grasp technology that will keep our loved ones safe and healthy for years to come.

Social

Categories

Categories

Disclaimer…in case you didn’t already know…

None of the writing, opinions, or information contained in this blog should be taken as any kind of suggestion for your own diabetes care. I am not a doctor, dietician or trained diabetes educator (although I play one in real life) and have no formal medical training. If you have questions or concerns about individual health matters or the management of your diabetes, please consult your doctor, specialist nurse or diabetes care team.